April 1, 2009 — -- For the last decade, Michael J. Fox has been a tireless spokesman for Parkinson's disease research. The actor, who retired from his hit sitcom "Spin City" in 2000 because of the disease, tells his personal story of how he turned his challenges into opportunities in his new book, "Always Looking Up: The Adventures of an Incurable Optimist."
Fox begins the book with his retirement and the struggle of shifting between his public and private personas.
Read an excerpt of his book below.
In the opening pages of Lucky Man, I described a morning in Florida nineteen years ago when I woke up with a hangover and a twitching left pinky finger. In the intervening years, my life has seen many changes. Most mornings, for example, I awake to find my left pinky finger perfectly still -- it's the rest of my body that's shaking uncontrollably. Technically, my body is only fully at peace when my mind is completely at rest -- that is, asleep. Low brain activity means fewer neurons firing, or in my case, mis-firing. As I awaken, before my conscious mind really knows what's happening, my body has already gotten the news in the form of insistent neural instructions to twist, twitch, and contort. Any chance of slipping back into sleep is lost.
This morning Tracy is already up, dealing out breakfasts and readying the kids for school. I blindly fumble a plastic vial from the nightstand, dry-swallow a couple of pills, and then fall immediately into the first series of actions that, while largely automatic, demand a practiced determination. I swing my legs around to the side of the bed, and the instant my feet hit the floor, the two of them are in an argument. A condition called "dystonia," a regular complement to Parkinson's, cramps my feet severely and curls them inward, pressing my ankles toward the floor and the soles of my feet toward each other as though they were about to close together in prayer. I snake my right foot out toward the edge of the rug and toe-hook one of my hard leather loafers. I force my foot into the shoe, repeat the process with the left, and then cautiously stand up. Chastened by the unyielding confines of the leather, my feet begin to be-have themselves. The spasms have stopped, but the aching will persist for the next twenty minutes or so.
First stop: the bathroom. I'll spare you the initial details of my visit, except to say that with PD, it is essential to put the seat up. Grasping the toothpaste is nothing compared to the effort it takes to coordinate the two-handed task of wrangling the toothbrush and strangling out a line of paste onto the bristles. By now, my right hand has started up again, rotating at the wrist in a circular motion, perfect for what I'm about to do. My left hand guides my right hand up to my mouth, and once the back of the Oral-B touches the inside of my upper lip, I let go. It's like releasing the tension on a slingshot and compares favorably to the most powerful state-of-the-art electric toothbrush on the market. With no off switch, stopping means seizing my right wrist with my left hand, forcing it down to the sink basin, and shaking the brush loose as though disarming a knife-wielding attacker. I can usually tell whether shaving is a good idea on any particular day, and this morning, like most, I decide it's too early to risk bloodshed. I opt for a quick pass with an electric stubble trimmer. Miami Vice lives.
A bench in the shower takes the pressure off my feet, and the steady drumbeat of the water on my back has a therapeutic effect, though if I sit here much longer, I might never get up. Getting dressed is made easier by the pills, which have begun to assert their influence. I avoid clothing with too many buttons or laces, although I'm still addicted to Levi's 501s, making me a fashion victim in the truest sense of the word. In lieu of proper brushing, I raise my twitching fingers up to my hairline and, raking it back, hope for the best. Executing a slow shuffle (my legs haven't yet earned my trust for the day), I make my way out to greet my family.
At the turn from our bedroom into the hallway, there is an old full-length mirror in a wooden frame. I can't help but catch a glimpse of myself as I pass. Turning fully toward the glass, I consider what I see. This reflected version of myself, wet, shak-ing, rumpled, pinched, and slightly stooped, would be alarming were it not for the self-satisfied expression pasted across my face. I would ask the obvious question, "What are you smiling about?," but I already know the answer: "It just gets better from here."
How to Lose Your Brain Without Losing Your Mind—that was my original title for the memoir written eight years ago. On the second or third page of the earliest draft, I made reference to myself as being a "lucky man." After a few edits, I kept going back to those two words, and eventually they found their way onto the cover of the book. They fit then, and they still do now.
As the title for this new book, Always Looking Up works on a couple of levels. First off -- let's just get this one out of the way—it's a short joke. At a fraction of an inch under five-foot-five, much of my interaction with the world and the people in it has required that I tilt my head backward and direct my gaze upward. However, this isn't a manifesto about the hardships of the vertically challenged. Frankly, my height or lack thereof never bothered me much. Although there's no doubt that it's contributed to a certain mental toughness. I've made the most of the head start one gains from being underestimated. And that's more to the point of it -- Always Looking Up alludes to an emotional, psychological, intellectual, and spiritual outlook that has served me throughout my life and, perhaps, even saved me throughout my life with Parkinson's. It's not that I don't feel the aching pain of loss. Physical strength, spontaneity, physical balance, manual dexterity, the freedom to do the work I want to do when I want to do it, the confidence that I can always be there for my family when they need me -- all of these have been, if not completely lost to Parkinson's, at least drastically compromised.
The last ten years of my life, which is really the stuff of this book, began with such a loss: my retirement from Spin City. I found myself struggling with a strange new dynamic: the shifting of public and private personas. I had been Mike the actor, then Mike the actor with PD. Now was I just Mike with PD? Parkinson's had consumed my career and, in a sense, had become my career. But where did all of this leave me? I had to build a new life when I was already pretty happy with the old one. I'd been blessed with a twenty-five-year career in a job that I loved. I had a brilliant, beautiful, funny, supportive wife and an expanding brood of irrepressible kids. If I had to give up any part of this, how could I possibly protect myself from losing all of it?The answer had very little to do with "protection" and everything to do with perspective. The only unavailable choice was whether or not to have Parkinson's. Everything else was up to me. I could concentrate on the loss -- rush in with whatever stopgap measures my ego could manufacture. I could rely on my old friend from the nineties, denial. Or I could just get on with my life and see if maybe those holes started filling in themselves. Over the last ten years, they have, in the most amazing ways.
What follows is a memoir of this last decade. But unlike Lucky Man, it is thematic rather than chronological. Work, Politics, Faith, and Family. These are the struts of my existence. These are the critical supports of my life.
Together they form a bulwark against the ravages of Parkinson's disease. My identity has so much to do with my ability to self-express, to assert my creativity and productive worth (work), my rights and the rights of whatever communities I'm a part of and therefore responsible to (politics), my freedom to seek spiritual purpose (faith) and to explore the complex bonds I share with those I love most (family) and without whom I would have long since succumbed to darker forces.
While not a strict narrative, Always Looking Up describes a journey of self-discovery and reinvention. The story is a testament to the consolations that get me through and give meaning to every area of my life.
For everything this disease has taken, something with greater value has been given—sometimes just a marker that points me in a new direction that I might not otherwise have traveled. So, sure, it may be one step forward and two steps back, but after a time with Parkinson's, I've learned that what is important is making that one step count; always looking up.